Hello,
I found this site after seeing the Mystery Diagnosis show with Linda Smith. I have been experiencing so many of these symptoms since January of this year, following a pretty rough car accident. It started with Migraines, then passing out, then the crazy, rapid heart rate. Through this entire process, I have only felt good for about 8 weeks, right after I started taking Florinef. That, however, is no longer controlling my symptoms. Last week, I passed out while driving and hit a palm tree. Needless to say, I am desperate to find out how to get this under control. I had a positive tilt table test in March. My bp dropped to 67/38 and the the hr jumped up to 125. I was diagnosed with Orthostatic Hypotension. I was initially told that my headaches had nothing to this and were something that was the result of the car accident. Because of all of this, I was "seperated" from my employment last week, as they felt I posed an "unmitigated risk" to fellow employees and guests.
I guess my question is this, how do you get into these specialists at Mayo and Cleveland Clinic. I have been referred to the Mayo Clinic in Scottsdale but they say it could be 4-6 months before I can get an appointment. I don't know that I can wait that long. Any suggestions would be appreciated. I am desperate!

Hi, Rachelnh--

Sorry to hear your having such problems! I was able to get in to Cleveland Clinic with a simple phone call I got from their website. My appointment was scheduled within one week from the time I called and I did not have to have a referral from my pcp. They did request that I bring my prior medical records. We checked in on a Monday, had testing T, W, and F and returned the following Monday for my final consultation with diagnoses and treatment recommendations that I could follow with my pcp.

I saw five different doctors while there and had numerous tests. It was a great place and everyone was helpful, courteous, and informative from the very first phone call all the way through. I highly recommend this place and I drove 16 hours to get there. It was worth it!

If you decide to go there, you can PM me for further details if you'd like, such as a place to stay, shuttle services, parking, etc. From what I've read on here, it takes a lot longer to get in at Mayo and Vanderbilt.

Keep in mind that any answers you get will probably not be complete solutions, but at least you will be off to a good start. It takes a good while to get everything balanced out, and then the least little thing can throw you out of whack! I wish you the best in your search for answers!

I don't believe they can fire you for the --I assume driving problem. The Americans with Disabilities Act does not look kindly on that. They don't have to give you your same job, but I believe they have to give you something in the same pay range.. And for goodness sake get Cobra if you can't talk them into keeping you, because your medical bills with this stuff are HUGE!!
If the car accident happened on the job--get a lawyer quick. I'll let the others help you with the mayo thing, but I am trying to help you keep a way of paying for the mds.

I am a lawyer (but I prepare Wills, Trusts and handle estates, taxes, etc.) and I would advise you to see an attorney immediately. There may be ADA and state protections or they might have to accomodate you - but you need to see an attorney licensed in your state ASAP!

Welcome,

My husbands POTS was brought on by him having many whiplash injuries over the years. He to was dxed at the Cleveland Clinic by Dr. Fouadt. She is a syncope specialist there and is great. We meet with her the first day and had testing done and then went back the following day for the results. She knew by just taking Bills history what the problem was and that was the best thing that I have ever heard.

Bill too has lost so many jobs, I think 6, due to the POTS. He now is getting disabililty and it was a relief when that was approved.

Here is the link to the Clinic www.clevelandclinic.org or you can email me at tchilders99@yahoo.com with any questions that you may have.

Best of luck and hope that you feel well soon.

Tammy

Hi & Welcome!!!

I jus went to Mayo/Scottsdale in May. On their website is a place to request an appt. I submitted a request on Friday, got a callback on Monday and their first appt was that Wednesday (although I deferred to the following week).

I did not have a diagnosis at that point and had to start with an Internist. This may be why my appt was available so quickly. BUT during the first 4 days I was there, I was able to see their specialist in dysautonomia. (He was kind enough to adjust his schedule to see me).

If you have a referral - call Mayo and see what they have. They are awesome!

And I agree with the other posters - if your health is why your employee let you go then you have rights.

Thank you everyone for the responses and information. This has been very hard to deal with and I am currently experiencing panic attacks and depression. I came out of the 2nd cardiologists office yesterday in tears, looking for a bus to jump in front of. I do have good health insurance and I will be on Cobra until my husband can get me added to his insurance in August. I will call the Cleveland clinic and see if they can get me in. I am just looking for some answers. I have noticed that there are a lot of people on here with the same symptoms as me. This could explain a lot about my health since I was a teenager, such as the wicked endometriosis and ovarian cysts, hypermobile joints, the way I feel pain, extreme sensitivity to medications, plus all the new symptoms. I would be happy if they could treat the symptoms and keep the Migraines away. I have blown through 4 different migraine meds in the last 6 months. Since I have to take them so often, they work great at first, but within about a month, they don't work at all. Does anyone else have this problem?

[QUOTE]Originally posted by WantMEBack:
......I just went to Mayo/Scottsdale in May. On their website is a place to request an appt. I submitted a request on Friday, got a callback on Monday and their first appt was that Wednesday (although I deferred to the following week). I did not have a diagnosis at that point and had to start with an Internist. This may be why my appt was available so quickly. BUT during the first 4 days I was there, I was able to see their specialist in dysautonomia. (He was kind enough to adjust his schedule to see me).

....QUOTE]

Is there a particular physician/specialist you would recommend at Mayo Scottsdale for autonomic disorders? Thanks.